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Moving on - Carers UK Forum

Moving on

For anyone who is bereaved or no longer providing care.
My mum died nearly 3 years ago. She suffered from dementia and was 95 when she passed away. I spent 3 years caring for her in her own home and then 4 years supporting her in a care home. After my mum died well meaning people said to me: "you will be able to get your life back now" but I don't know how to/or can't. There is so much support out there for people in a caring role but there doesn't appear to be any organisation that helps carers who have lost the person they cared for. You are not only grieving for the person who has passed away but for your role as a carer. I question myself every day about the decision I made to place my mum in care and whether I did the right thing by her and of course I can no longer ask her. Most of the time in care she was well looked after physically but not mentally - no stimulation, television on all the time etc and we had a lot of good times and laughs together whilst she was a resident but she quickly became institutionalized and she was often unhappy and angry. So again I question myself- was this my fault?

I know how you feel - since losing our severely disabled 31 year old son 13 weeks ago we are totally lost. We don't know what to do with all this extra time. People are saying you should go on holiday but where to? We never thought oh as soon as our son is dead we will do this, this and that. I am waiting to go into hospital to have my gall bladder removed and hubby is needing to go in to have his double hernia sorted out. That is as far ahead as we canthink at the moment.

Hello Susan and welcome to the forum.

My situation is very similar to your own - I too cared for my Mum (Alzheimer's) full time for seven years until she passed away in 2012 (her last six months were in a care home). She was 88 when she died and I frequently wonder if she would still be alive today if she hadn't moved into the care home but I'll never have the answer to that question - "the past that didn't happen is as hidden as the future yet to come". So no amount of "what if's" will change what happened or bring her back. I do know ('cos we talked about it pre-dementia days) that my Mum would have wanted me to get on with my life and I'm sure yours would want you to do the same.

As sad it is, it wasn't their 'fault' that they developed dementia, nor was it ours - no-one is to blame.

Yes, there is now a void in our lives where our Mum's used to be and, yes, it can be difficult to find things to fill that void. I try to find enjoyment in my nieces children (I never married and have no children of my own) and in volunteering for a couple of local charities - but mostly it's just me and my little cat !

After your Mum died did you get any bereavement counselling ? It's not too late now and could be really helpful in allowing you to come to terms with your feelings (your GP or a local hospice will be able to point you in the right direction).
Hi Susan,

It's time to give up going over what happened. Start by writing down all the reasons mum went into residential care.
Then write down how you felt at the time.
YOU DID YOUR BEST. You supported mum as much as you possibly could. What more could you have done? If you kept mum home, how much longer would you have managed for? Would it have made her symptoms go away? Of course not. Without your help and support, she would probably have been unable to live at home for as long as she did. YOU DID YOUR BEST. Every time negative thoughts creep in, keep telling yourself this.
I found a book called "Starting again" by Sarah Litvinoff really helpful, although aimed at divorced people, there is much relevant to anyone widowed, or a former carer. Best of all, it's very readable, you can dip in and out of it, and there are some useful exercises to do, to clarify how you are feeling.
Are you fit and healthy? If not, especially during the summer, try to get out and about on foot, every day. Not only will it make you fitter, it will lift your mood.
If you feel like you have nothing to do to fill the empty hours, start by doing something on a regular basis. A class, academic or just for fun. See if there is a local volunteer bureau locally in need of your talents. Think about being a volunteer at a local school to hear children read.. there are so many opportunities.
Are you "stuck" in a time warp. Maybe overhaul your wardrobe, have a new haircut or colour, something that helps YOU. I've had a lot of loss, illness and sadness in recent year. After my husband died I "let myself go" for a while, but my own regular treat is a home beautician to shape my brows, colour my lashes, etc. I always go to the hairdresser for a cut and colour every month. So even if I'm just in the usual jeans and polo shirt, I'm looking good. I've also bought some new clothes and ditched some old ones - ditch any with unhappy associations. I'm not advocating spending a fortune, there are lots of bargains at the moment in the shops and from the catalogue companies.
If you haven't done so already, think about dealing with mum's personal effects. You won't forget mum if you let some of her things find a new life with someone else, via a charity shop.
If you are not sleeping well, ask your GP to give you something to help you sleep, Amitryptilene helped me at a very low dose.
In total, this is making space for new opportunities, new adventures.
Hi Susan,

Welcome to the Forum. Your post strikes a chord with me too. Like Susieq, my mum had dementia (a whole host of other issues too) and ended up in a nursing home. She died just over 2 years ago. And yes, as a former carer, I feel that not only was I bereaved, I was made redundant!

Terribly difficult to move on. I too ask myself questions as to how I could have done things better / differently. Did I do enough? But the decisions we took are made and we cannot go back in time. It was not our fault that dementia robbed our loved ones of their personality (and us our lives). At that time we did what we thought was best. And I do feel that we owe it to our mums, to honour them, to live our lives. After all, what would they want for us if they could speak now, surely they would want us to be happy and move forward?

I too wonder about bereavement counselling, even at this late stage. One thing which annoys me is that no-one seems to want to talk about my mum. Anyone who knew her is either dead, or has seemingly forgotten her. She should be worth more than that.

In short, we have no answers but what you are feeling is, I think, a common one. What do you enjoy doing that you couldn't do when caring for mum? Maybe start with that. I don't believe you ever get "over" the loss of someone but that loss becomes part of you and you take that forward to make new memories.

Take care, Anne x
Hi Anne, I don't like the term "bereavement" counselling because it's so negative. I was offered it after my husband died suddenly, but I was so shocked that it was years before I could begin to get my head round what had happened. Ten years later, I've never really told anyone how I feel. Those feelings are in a special compartment for me alone.
However, I had counselling to help me manage my mum, and that was hugely helpful. I thought after all my years of caring that the "old" me was gone, but the counsellor could see in me what I thought I'd lost. He said that certain things I talked about really made me come to life.
As I can't draw, I thought I wasn't artistic, so when I told him this, he laughed and said I was actually one of the most artistic people he'd ever met! I may not be able to draw but I love sewing, curtain making, etc. and I always wear clothes that go together well. Just that one sentence from him about me did more than anything else has ever done.
Maybe you should think about having some "moving forward" counselling instead? You have nothing to lose and may have so much to gain.
((((hugs to you all))))
As lots of you know I'm at the ambiqous grief stage. I still have the feelings that I'm going to bring my husband home. I can't, it's honestly not possible, wouldn't be fair to him, my family or even me.
The forum is a massive support to me, and it enlightens me to what could be the next stage?
I'm certain you all did the right thing for your loved one. Whatever we do comes from the right place, the best we can.
So, another ((( hug))) for you all. Stay strong
It is easy to say "move on". But for some people it is very difficult, I think?
I've been widowed for almost 11 years, but still struggle to "move on" in some areas. This afternoon I've just got rid of a lot of our stock, to a friend and former customer, but he came with his wife and it reinforced yet again how unlucky I was to be widowed at 54, when all my friends still have their husbands. I didn't just lose a husband, but my best friend and employer, absolutely my "other half". My friends had mothers they went shopping with, had fun with, went on holiday with. Mine was housebound by the time I had my first child. Sometimes, I can't help wondering what on earth I did to get my life this way?!